Journal Issue: Children with Disabilities Volume 22 Number 1 Spring 2012
James M. Perrin
Promising recent work has increased attention to long-term outcomes and ways to diminish disability among children and adolescents, building on the larger body of work that has addressed short-term health care processes and near-term improvements in health status among children in general. The most promising results for chronic conditions have come from condition-specific groups, where like-minded scientists, clinicians, and families have banded together with a common goal of improving critical outcomes for children with specific chronic conditions. These groups increasingly recognize the need to consider broad functional outcomes to judge the effects of treatment.
If action is not taken, growing numbers of children with chronic conditions and associated disabilities will lead to substantial public burdens on health care and social services in the next decade. There is a substantial possibility that children with disabilities will reap only limited gains from current efforts to assess and improve child health care quality.
A critical first step is the recognition of the importance of disability among young populations and the substantial risk that ignoring that disability will lead to major health and functional impairments among a large swath of young adults in the coming decade.
Improvement will require similar efforts broadened to the major causes of child and adolescent disability as well as efforts to prevent those conditions and their secondary effects. Substantial measurement already exists for quality in childhood illness and health care. For young people with chronic conditions, it is critical to build a stronger conceptualization of child health and well-being, based on formulations such as the ICF, which will allow systematic attention to key areas of child and adolescent short- and long-term functioning, along with better assessment of their physical and social environment. Quality measurement needs to expand to include these areas of concern. Having agreement on these areas and on the best ways to measure them will help a good deal in efforts to improve long-term functioning and quality of life for people with disabilities.
Real improvement must follow from active use of measurement to identify promising targets for change. The increasing evidence that quality improvement based on clinical and system redesign can bolster care and outcomes, much of it currently from disease-specific applications, provides a framework for broader dissemination. The lessons learned—collaboration across sites, data sharing with transparency, implementation of quality improvement cycles, and involvement of parents—can apply to a wide variety of childhood disabilities.